Status report

So hubby had a bad setback that landed him back in the hospital. (I referenced it here) He caught an infection in his blood from his catheter, and his blood counts were so low that he started bleeding in his eyes and experienced some vision loss. We've been to three specialists, and no one is sure how permanent this vision loss is going to me. So many maybes... Hubby went into a full-blown panic for a while, which terrified me. He doesn't panic, and I don't know how to deal with his panic. He's so solid and strong, even when he's not, and I just didn't know what to do.

We've taken some real financial hits throughout this, and our taxes provided the nasty surprise that hubby forgot to change his tax withholdings and the feds are going to be the latest vampires at the door. I'm trying not to go around the bend, and I'm not really winning at that, and I've been full of frustration and despair and other things that I can't name. Then I talked to an old friend from high school. She's been reading my posts on facebook and she decided that she wanted to do something to show her support of my family, even though we haven't seen each other in 12 years or so. So she's going to run a half-marathon to raise money for the Leukemia and Lymphoma Society. I'm completely flabbergasted. I'm so touched that she's putting forth this kind of effort (she's never even met hubby) for someone she knew in high school. I think this is a testament to the idea that our words, our pain... it has power... Even when it's half-expressed and ill-conceived ideas. I'm glad I can still reach people... and that there are people in the world that care enough to run 13 miles because I hurt.

Please help Send Amanda to the Bayshore Marathon.

Donate if you can.

Why this pisses me off....

I got two facebook emails today on the same subject. Here they are:

This was in my inbox and thought I'd pass it on...not sure in teh least how it is supposed to spread cancer awareness but I have gotten the idea it is annoying some of hte guys and who can resist that? *evil laugh*

"Some fun is going on... Just write the colour of ur bra in your status nothing else and send it on to only girls no men. It will spread the wings of cancer awareness. It will be fun to see how long it takes b4 the men will wonder why all the girls have colour in their statuses!"

and...

Something fun is going around! Update your status with the color of your bra, nothing else in the message, just the color. Then send this to all the gals on your friend list, but none of the guys. Let's see how far this goes to spread cancer awareness and how long it takes before the guys start wondering about the color updates!

I wrote this status update as a response:

Dear friends: if knowing the color of my underwear helped heal cancer, my husband wouldn't be lying in a hospital bed in the fucking emergency room right now. Feel free to spread all the bullshit forwards you want, but leave me the fuck out of it.

So here's a brief list of my issues with this message, mostly for the benefit of people who sent it to me, and then saw my status update:

1. Secret memes don't raise awareness of anything. It's a game, which is nice for people who remain untouched by this illness, but why send it to me? I don't PLAY cancer games. I live with cancer. I know that you know the difference.

2. If the only way to raise awareness about a serious health issue is to titillate friends and acquaintances with talk of your underwear, then there's something wrong with your friends and acquaintances, or there's something wrong with you. Using your tits to sell concern about cancer is crass, base, and is the sort of behavior that makes you complicit in your own objectification. Even if you don't consider yourself a feminist, you know that I DO. So again, why send this to me?

It didn't help that I was getting these emails while I'm trying to communicate with John's oncologist while in the ER. (He was admitted tonight, apparently he's got a nasty unidentifiable infection and he needs [another] series of blood transfusions.) I have ignored the other stupid facebook cancer meme, with the stupid heart shapes in the fucking status updates, but this one...is just fucking appalling.

And another thing...

I'm certainly making up for lost time today...

I hate that my husband has this thing sticking out of his chest.



I can't explain how horrifying it is to see him walking around with tubes sticking out of his chest. The chemo goes in them. they pull blood from them (which is icky and disturbing and makes me ill to even think about, much less witness). Occasionally they require 'flushing.'

Argh. Fuck cancer

Another end-of-year list

In an attempt to release some of this negative energy, here is a list (in no particular order) of things that piss me off.

1. Burkitt’s Lymphoma . Seriously, fuck you. My husband is one of 10 Americans in his age group with this disease right now. 10. Yes, he will be cured. Yes we will come through this 'stronger,' but we were already strong enough so fuck you cancer.

2. The phrase "you will come through this stronger." FUCK THAT.

3. Resting the starters in the middle of the 3rd quarter when you have a lead and it's a home game AND the other team needs to win to potentially play you in the playoffs. Fuck you Jim Caldwell.

4. Crash and Amelie. They just piss me off.

5. People that ask questions that they don't want to know the answers to.

6. People that ask questions they already know the answers to.

7. People that congregate in doorways, the tops of escalators or stairs, and anywhere else that impedes other people. I don't care if you're on vacation, stop being so fucking thoughtless.

8. The San Diego Chargers.

9. My insurance companies. Both of them. All you do is take my money and make my life harder. Fuck you.

10. Anyone who gets righteous about any of the following:
a. not owning a television
b. not drinking caffeine
c. not watching sports
d. not believing in God
e. not eating meat
f. not smoking
Memo to the world: The things you DON'T do, for whatever reason, don't make you special. The things you jump into in this life matter. The things you retreat from are largely personal, and the rest of us don't give a shit how unique you feel for discarding them.

11. Nurses who wear perfume on the cancer ward. Way to introduce a group of nauseous people to your whorish scent and selfish disposition. You're TOTALLY in the right line of work.

12. People that start shit with you and are then surprised when you fight back. If you don't want a fight, then don't fuck with me. It's not complicated, and there are plenty of people in the world who are willing to be doormats for a bully. I'm not your girl. Ass.

13. Those fucking Swiffer commercials that imply that women have romantic relationships with their cleaning implements. (cuz apparently only women clean) That's just so fucking off that I don't even know how to respond. If you looked at our society through the lens of our commercials, would it be even remotely familiar?

14. People that think Obama is Jesus incarnate. He's not.

15. People that think Obama betrayed progressives. You don't listen well.

16. People that think Obama wasn't born here. You're fucking paranoid, and likely a complete fucking racist.

17. People that think Obama is a socialist. You're fucking stupid.

18. UPDATE. I hate that I got an email from these guys because an 11-year-old is pregnant and too scared to finger her abuser. The state won't fund the termination of her pregnancy without a police report. I hate this ugly scary world.
There, now I feel a little better.

I am, in fact, an angry girl

I know it’s been a long time since I’ve posted. Most of the stuff that’s going on in our lives revolves around people I won’t reference here. It’s not fair to invite certain people into this public forum without their permission, and I don’t want them reading this, so I’ve mostly been quiet.

Too quiet it seems. I’m sensing a few themes in my life right now. One is that everyone else seems just as hypersensitive to things as I am, so I find myself wishing I’d held my tongue, even (especially) when I don’t mean any harm. The other thing I’m finding is that more than a few people think that I’m closed off. There are lots of people fighting to offer me a hand in the things that I’ve been going through, and they think that I’m not open to receiving help, or letting my guard down. They’re right, of course, but people seem to be taking it personally.

I am private (ironic to say this in a blog post, I know). I am guarded, even with people I love. I don’t share easily, I don’t open up easily. These are things that are hard for me. I’ve been hurt before, too many times to count. Even when I tear down my own walls and just express what I’m feeling, I typically don’t like what I get back. It’s a hard, cruel world out there, and turtles have shells for a reason. I like my shell. It suits me. I’m comfortable there. There’s room for my husband, my dog, the occasional friend, and not much else. It doesn’t mean I don’t love all of these people (and I acknowledge that this is a nice problem to have), it just means that I can’t lay myself bare for them or anyone else. Not without significant emotional turmoil. I don’t have the luxury of having that kind of turmoil right now. My job is to be a pillar to my husband and my home. I need to hold them up. I can be a fucking mess later. I can work on my relationships later. Right now everything in my life is on hold. This is an expensive choice I’m making here, I realize that. I’m going to lose people. I’m going to hurt some feelings. There are people who aren’t going to understand. I don’t see another way though. I can’t talk too much about how I feel right now, or what I’m going through, because I just keep feeling it. It’s brand new every time I say something to someone. Doing that feels like skinning myself raw just so people know I trust them. I can’t afford to be that kind of mess. My family can’t afford that kind of mess.

So here’s the status update for all concerned parties:

1. Life is shit right now. We’re skating on the razor’s edge financially (a tree fell in the backyard, across three yards, and crushed a neighbor’s car. Insurance refused to pay to haul it away. Don’t know if they paid for the cars, but I had to dip into my retirement to get the tree out of there, as it was in a precarious position and could have caused more damage.
2. Hubby’s treatment is progressing, and we’ve had no real nasty surprises, but being poisoned once every few weeks is wearing on his mood, and it’s a fight to get him to check in to the hospital anymore.
3. I am just completely drained. If it’s not the tree or the cancer, it’s the job (which I have very little investment in right now, given the circumstances) or illnesses in my family. I feel like I’m being pulled apart. I can’t be anywhere I want to be for any amount of time that’s worthwhile, and even if I could, I can’t marshal the focus to be a worthwhile addition to any of these circumstances.
4. Christmas was fine, if you like that sort of thing, and I generally don’t.
5. I’m getting sick. This is a natural response to all this stress, I know. However, my husband can’t get (another) infection, so I’m banished to sleeping in my tv room until I’m better. So even when he comes home (tonight), I’m isolated. It’s really fucking lonely, and the loneliness is compounded by the fact that I can’t reach out to anyone on my own fucking terms because I’m not doing enough weeping and wailing.

On blessings

I ended a previous post about the stress of the past few days with a statement about how we are blessed. Let me elaborate.

My favorite high school teacher (who would NOT appreciate my potty mouth on this blog) was once run over by a bus. He was in a great deal of pain, he drifted in and out of consciousness, and at one point he came too and told his wife he was hungry. She offered him the apple from her purse, the only food she had in the midst of the emergency room anxiety. He told me that eating that apple was the most enjoyable feeling of his life, and that nothing that he's ever eaten has tasted as good as that apple on the edge of his life.

I think that story is beautiful, but until now, I've never understood it (which was a blessing, may you never 'understand' it either). In the midst of the most painful situation of our lives, I've seen such kindness from every facet of our lives, I don't have words. My hubby's coworkers donated six weeks of leave to help him through chemo, friends have shown up with food and done grocery shopping and research and even loaned us a vacation house so we could hang out before all the madness started. Our church has been a constant source of support (one our ministers calls John about once a week. For a congregation our size, I think that's amazing.) I've cried on many shoulders, held many hands (including the feisty grandma of the bride last weekend) and have found myself propped up by dozens of hands (and not in a creepy Labyrinth way). For every sharp pain to my guy that cancer has delivered, I've had a basket of apples to choose from. That basket seems to be bottomless.

That's why I say we're blessed.

What I don't talk about when you ask me how I am

I don't know if this dance is the same for every cancer spouse (I don't know if cancer spouse is even the right phrase. I think I made it up. If I stole it, I apologize to whoever), so I'm really only speaking for me. It goes like this:

Person X: How are you? Really?
Me: (Insert random platitude here)
Person X: I'm here for you if you need me. Please know that.
Me: Thank you so much. That means a lot to me.
Person X: (Insert cancer anecdote here)
Me: (Insert new platitude)
Person X: (Tell a story about how I need to take care of myself in order to better take care of hubby)
Me: (nod sagely)
Person X: (give me a story about why hubby means so much to him or her. No bullshit here, he's deeply and profoundly loved, and quite worthy of it all.)
Me: (Insert new bullshit platitude)
(hugging)

Here's what I think when all of this is going on:
How are you, they say, and my mind just buzzes and buzzes and buzzes about money, and how I have to work, and how I wish I could walk the dog normally, and how could one take-home medication be 5k, and how could insurance refuse it, and why the fuck can't I get a swine flu shot, and jesus where is my testing kit for my diabetes because I can't remember if I've taken a fucking pill this week and I can't fuck up my blood sugar on top of everything else and fuck fuck fuck?

I'm here for you, they say, and I think, take this bullshit cliche, don't make me talk about how I feel, about the death of the life I knew, about what babymaking means for us now, about what anything means for us now... take my cliche, swallow it like I mean it. I can't start and not stop. You can't volunteer and not take me over for a lifetime. I'm stuck. I need to talk about this forever or not at all. I need both. I need you to hear me all day everyday or never again. take the cliche. It's your unsticking. Don't be stuck with me. I can't get you out, and it's not fair to keep you here, even though I need you. I need you desperately, because I'm a bundle of need. Run. Run. Run away. Don't run. Save me. Nevermind. Run. I'm going to stop listening now, because you're about to make me cry, and when I start, I can't stop...

That's about how it goes.

The last 8 days

The post is bleak, so here's a puppy picture to brighten it up.

So hubby started chemo last Tuesday. There was a four-day hospital stay, two spinal taps, some (possibly excessive) steroid injections, a wedding, and some serious crabbiness. The first bout was rough... and it's slowly getting rougher. He's already lost 20lbs (He's a big guy, so it's not so bad) and his eyebrows are falling out. This is all going so fast...

Here are some fun (or odd) facts about chemo:
1. your can sweat it out of your pores for up to 48 hours
2. during chemo, you should courtesy flush (it's not just the pores!)
3. when they inject chemo into your spinal fluid, you get nasty migraines that only go away when you lie flat....for 12 hours at a time.
4. If you're still sweating out the chemo, caregivers should wear gloves when changing your bed linens

I remember the part of my life where none of this would have occurred to me.... it was a nice part.

I went to football practice tonight! It was so nice to see the ladies, and one of my fellow blocking backs told me about her kid's chemo (he was 2 at the time, and it was 14 months...) and offered me all the help and support I needed. I watched them run plays for awhile, played with their kids, and all had a good night.

I feel like crap. I feel exhausted. We're so unlucky.

But we're really, really blessed.

This Post is better suited for Monday morning

My football picks are 8-4, and the Jets-Miami game has set a new precedent for me. Fake punts are now the best indicator of a crazy game.

I hope everyone enjoyed their long weekend. I was light on posting because my in-laws came to town to help us out. Hubby started chemo yesterday, and it’s good to have someone here to advocate for him full time, while I do annoying things like work. My father-in-law went home, but my mother-in-law is here for a month. I’m really glad to have some help!

There’s something about the city that I live in and fall. It comes in at night, and summer beats it back by early afternoon. The mornings are quite crisp these days, but by mid-afternoon everyone sheds their hoodies. It looks like an accelerated version of the shift from winter to spring. I kinda dig it, to be honest. It’s a small distraction from the sheer speed of my life these days. It’s nice.

So I finished the book I’m going to report on this week, I just need to collect my thoughts about a troubling trend I’m seeing in these books, and I’ll send all of my insights straight to you. I’m out of pocket this weekend, so I’ll try to load you up on good stuff before Friday when I disappear again.

How we got here

It all started in early August, just after my birthday. I noticed that the hubby wasn’t really doing great. He seemed angry all the time, and he just didn’t seem to have any energy. We were fighting about stupid shit constantly, and I was really starting to wonder if we were going to need a come-to-Jesus meeting of some sort. He’d been to see his doctor sometime that month because he was having strange pains in his side. She gave him some antibiotics, told him it might be appendicitis and that if the pain got worse or included nausea, he should go to the ER immediately. He took the antibiotics and the pain went away, he said. By Labor Day weekend he was a raging asshole and I wasn’t sure I could deal with him anymore (and I was out of town). When I got home he was in so much pain that he couldn’t sleep. We went to the emergency room on Tuesday morning. I dropped him off, and they told me I couldn’t sit in the waiting room with him.

These motherfuckers put a security guard between me and my husband and they left him in the waiting room for 7.5 hours. If not for text messaging, I wouldn’t have known what was going on. I called everyone at the hospital I could find, screaming, yelling, and threatening to sue. I called his doctor and begged her to intercede (she declined. Bitch.). By the time they finally saw him, the pain was so bad that they put him on morphine.

After that things got worse.

After 8 days of hell, full of dipshit doctors, nonanswers, a steadfast refusal to give him his blood pressure medication, STILL MORE YELLING, an appendectomy, and a few nasty days trying to fight off an infection, and they sent him home. (Great nurses though.)

Two weeks later they got the results of the biopsy of his appendix, and they told us he had Burkitt’s lymphoma, a form of cancer rarely seen in the Western world.

Now he has tubes sticking out of his chest. It’s hard for me to wrap my arms around him in the surprise hugs that have been the hallmark of our relationship. He’s shaved his arms because he’s tired of losing hair from all the IVs. He’s covered in stubble, makes it hard to curl up to him (his whole body is fairly stabby). He’s more irritable than ever. He starts chemo next week. Our lives are upside-down.

Fucking cancer.

An introduction, of sorts

I wanted to start a blog about my 30s. The crazy, odd blog I had my 20s was fun, but I lacked the discipline to keep it up. I meant to start a new one just after my birthday in August, but I never found the time. I figured I could talk about the flag football team I joined, and politics, and some pop culture, and the books I'm reading, maybe some stuff about being a UU....standard blog shit I suppose. Then I blew out my knee, so I won't be playing football for a while. The same day that I found out the specifics on my knee (torn ACL for the second time, possibly PCL, possibly meniscus tear) husband came home and told me he had cancer. And that I had to start writing again....

I'm not going to write a blog about fucking cancer.

At least not entirely.

I will touch on it, as it is currently touching me. I have a lot to say, and I'm rusty. This blog may suck for a while. It may be ENTIRELY about cancer for a while... It may be about anything BUT cancer for a while. The only thing I can guarantee is that there will be lots and lots of swearing.

That's all for now.